Tuesday, September 22, 2009

Well it didn't turn out to be the best birthday for him. ;s We went to see Dr W today and after an xray she found that he has re herniated. Part of his intestine or colon is trying to move back up through the gortex diaphragm into his chest. I had a feeling this was happening with him not being able to tolerate the faster rate of food, but it hearing it today was difficult for me. His testes haven't dropped, he has a clogged tear duct, and he needs to be circumcised, so we are trying to get things in order to do all of it at once. So, busy weeks ahead to prepare for surgeries. In the mean time we will continue to feed at this lower rate and pray he can hold out to get things in order. Camden is definitely not acting like himself. It takes a lot to get him to smile when normally I cant get him to stop! But he is a trooper as usual. Well, it was a nice hospital free time while it lasted. ;) Tonight I am thanking Jesus I have Camden home and healthy enough to be able to even have surgery.

Saturday, September 19, 2009

in the feeding department. Camden still wasnt tolerating his 9am feed, so we have slowed the rate and started an hour later to let his stomach have even more time to digest the continuous night feed. He hasnt vomited like he did since we have done this, so it is helping. Maybe his nissen ( surgery he had to stop things from going up the esophagus) has unwrapped completely or maybe his reflux is just getting worse? He was tolerating feeds better before, so something has changed. :( Feeding can feel like a daily battle, but I have to focus on the fact that is getting in and he is digesting most of it and still gaining. I am still working with the bottle and cereal and things havent changed much with that. I do know that the little cereal he does get down is more than he does when sucking the bottle. He is still supposed to be on the vent at night and during the long day naps. It is starting to not be that way. The day goes by and sometimes it just doesnt work out to put him on. It is like you dont want to interrupt him when he finally passes out, or you think he is just taking a cat nap and the nap ends up being his long one. I have many excuses to give Dr H. ;) Usually he goes on one time a day for a short time and he has been on EVERY night. I am obeying in that department. :) We go back to the pulm at the end of the month to see the next step with the vent.Anyway, he has done well. Not one disturbing episode. God is good and I cant think about it without crying. My little miracle. We are just hanging out as a family minus Micah tonight. She went home with Nana. Our regular night nurse who we thought was gone for good is supposed to be coming in at 11pm tonight. Supposedly she will work some nights for the rest of Sept, then will not be doing night shifts anymore so we probably wont be seeing her much after that. We will miss her! Very difficult having different people coming in and out every night, but God will work it out. My day nurses may be gone in a few months, but he should have night nurses much longer. I pray that we will have a couple of regular nurses so he doesnt have to wake up to strangers.This week we go see Dr W his surgeon and will be checking out his diaphragm. We also see the nutritionist so maybe we can think of a better eating plan. And I spoke too soon, he just threw his dinner up so I guess it isnt just breakfast. :(Busy week, so I may be slacking to get on here but I will try. Thanks to those who continue to pray for us.

Sunday, September 13, 2009

Tonight Camden has been squirming for the last couple hours. His reflux is acting up which may explain why his day feedings have been worse the last few days. He is still having issues with the morning feeds too. Threw up some of his breakfast again this morning, but not as much as he did in the last few days. He also had a hard time during his lunch today with lots of gagging and retching, but it finally passed and he held the food down. I hate to see him suffer and I feel like I am force feeding him!! It feels like a losing battle at times. I want to cut back on feeds but can't or he'll start losing weight and he is just gaining what he needs to as it is. We are now at a rate of 112 ml an hour and he takes 145 ml so it is taking about an hour and 10 minutes to feed him during the day. Feeding is such an ordeal. ;( I think I am going to hang out at that rate for a while and let him adjust to it for a few days. He is still on a continuous feed all night and still does well with that.

I am being more aggressive with the bottle. I got 15 mls down TWICE today singing this song like 15 times in a row :

"Jesus, Jesus, Jesus.....there's just something about that name. Master, Savior, Jesus, like the fragrance after the rain. Jesus, Jesus, Jesus, let all heaven and earth proclaim...Kings and Kingdoms will all pass away, but there's something about that name....."

I have to keep his attention! =p We sing this all the time. This is one of the songs I used to sing it to him when he was in the hospital when he just lay there with his eyes closed. I just sang when I didn't know what to say anymore. =)

Our night nurse called in again. The one that is here the most and the one we love! I hope she is ok...we haven't seen her in over a week. =(

Saturday, September 12, 2009

that is what I am feeling like lately. The weeks are flying by. Normally I cant stand it; to see my babies grow so fast, but I am loving it with Camden. Means he is getting stronger and closer to being trach free. =)

Eating: He has thrown up his breakfast the last two days and it was almost all of the feed. Not understanding this. He held down the other feeds, so I am trying to figure this out. And it isn't gag related because it wakes him out of his nap sometimes. I am going to try to give him his zantac an hour before his morning feed, but other than that I am at a loss.

He is still gaining, and last week weighed around 16.4.

I am trying cereal everyday and he tolerates more and more each time. Ends up getting about a tablespoon down. He tries to ignore me the whole time but tolerates me gently force feeding him, lol, then he will let me know when he is done by shaking that head NO! Bottle feeding is still the same. Sucking but not getting any down. Still at 5-10 mls, but sometimes only one. Looking like he may skip bottle feeding and go straight to spoon. By the time his suck gets stronger, he will be getting older and older and ready for sippy and spoon anyway. We shall see...we never knwo from day to day!

We are enjoying him so much. This age is so fun. He be 8 mths on the 22nd. He loves playing silly games with us like bumping our heads and he is always laughing. It is silent of course, but is looks like a big laugh and I can just imagine how it would sound. =p He is always making us laugh!

Our night nursing hasn't been great. ( To the point where we thought about changing companies but we didn't want to have to go through all new nurses because our day ones are great!) We would be OK if we knew the night nurses were calling in, but when you aren't prepared and you find out a couple hours before they are supposed to come, it gets frustrating. The first night is OK, but when it happens the next night and once again, you aren't prepared, you feel like you wanna cry. Marcus and I still do shifts, but with pumping my sleep time gets less and less and I am sure there are times my kids wished they weren't home schooled stuck in the house all day with zombie mom. =p Thankfully this week was better and I seem to have more coverage. The other difficult thing is dealing with new nurses. You get so comfortable with your main ones and when they have to call out you feel like you have lost a friend. ( my how life has changed )

And did you know that they actually will send "whoever" out just so you have coverage? ( when they can actually find coverage ) then you cant sleep anyway wondering who is spending the night with you. So, I have pretty much kept my mouth shut about the nursing situation on this blog, but that is how things are going in that area. =)

After getting so irritated about things, I started to think about how blessed I am to have Camden here to be able to deal with night nursing problems! =) woohoo!!!

Please pray for baby Mack and the rest of the Harrington family as they are going through a rough time with Mack being sick in the hospital....

Sunday, September 6, 2009

First off, we went to the ENT last Thursday. Dr. M walked in with the nurse practitioner and called Camden a "miracle child". How true that is and hearing those words just made my day. He is such a miracle! Everything looked good and if things continue to go as they are, we are still looking at getting the trach out during springtime. We need to get through this flu season first and of course wean completely off the vent.

He rolled over this weekend! He has been rolling from his tummy to his back, but finally did it from back to tummy. Hasn't done it since, but now we know he can. I believe his right arm gives him a fit, so he cant move it to roll on that side, but he did roll to the left. His bad arm is the one that looked awful while on ECMO and I dont know if that has anything to do with it, but it is his weaker arm. He definitely has problems with it. When he is having tummy time, that arm cant hold up either and he cries. I sometimes wonder if it hurts him.

Camden is pretty much sitting up by himself now. A bit wobbly, but can sometimes stay up on his own for a minute or two. His core is getting stronger each day.

He has taken a few steps backwards with the bottle feeding. THe last two times have been unsuccessful. He actually cries and shakes his head NO. I am not sure what is happening there. He seemed like he was making good progress. A speech therapist is coming to evaluate soon, so hopefully she can give me some tips.

We took him and the kids to a park on Friday. It was our first real outing together besides when we took him to church last week. It was a nice, overcast day and the weather felt nice. Camden loved it! I got some nice pictures of all my kiddos together and I immediately starting thinking about last Easter when Camden was still in the hospital and i had to take pictures of them without him. I remember holding the tears back trying to be strong for my kids. I had driven to my parents house ( they had been spending the week there ) to see them and be with them for the day. I was so torn because I had to leave Camden all day in the hospital, but yet I had promised my other kids I would come eat Easter dinner with them. I sometimes get emotional when I think of it, and I just thank God those days are over.

About Me

Camden James joined our family on January 22, 2009, weighing approx 8-9 pounds and measuring around 22 inches with an UNKNOWN congenital diaphragmatic hernia. He joins his father, Marcus and I and three brothers and a sister.He has a trach and has been off ventilator since winter of 09. He gets all nutrition from a gtube.Life is not what it was, but we are adjusting to our new normal and trusting God as He continues to guide.... *Camden had his first "reherniation" diaphragm repair on Oct 30 2009, patched with gortex.* Some colon had made its way in chest cavity, behind his heart.*He was hospitalized due to his first sickness resulting from a cold(we think) for the first time on Jan 6 2010, at almost one year old.*REASONS FOR BLOGGING? Obviously to keep close friends and family updated but more importantly to help others with special needs children. Other blogs encourage me, give tips, and help me realize that I am not alone on this journey.I hope to do the same for them.*Camden was decannulated on June 2, 2010!!!*UPDATE for 2011 He finally took interest in eating, but it isnt possible due to his nissen surgery being too tight. New hurdle to overcome..